We expect big ideas to come from young people in computers, social networking and music. In medicine, less so.
So meet Ryan Prior, age 23, of Atlanta, Ga. He suffers from a little understood but ghastly disease of the immune system known in the United States as Chronic Fatigue Syndrome (CFS), and in the rest of the world as Myalgic Encephalomyelitis (ME).
The disease is mostly incurable; affects men and women, but more women than men are recorded; and the Centers for Disease Control (CDC) in Atlanta says there are 1 million victims in the United States and 17 million worldwide.
Its impact is horrific; confiscating lives, wrecking homes, sundering love affairs and grinding down caregivers and families. For the most part, the sick are sick until they die. Some are bedridden for years. Advocacy groups say suicide is high. I have received many letters from patients who say they can't take the pain, the helplessness and the stigma any longer, and beg for a quick release.
Despite all this, the disease gets short shrift from the National Institutes of Health and the CDC, although patients say they get a better hearing at the Food and Drug Administration.
Enter the over-achieving young patient, Ryan Prior. His story begins on Oct. 22, 2006. Like many victims he knows exactly when he was felled, when normal life had to be abandoned. He entered a dark world where good times are marked in hours; where bad times are days, weeks or months in darkened, silent rooms.
Prior was student president at Warner Robins High School in Warner Robins, Ga. (about 90 miles south of Atlanta), captain of the cross-country team and was taking three advanced placement courses. “My goal was to attend Duke University or West Point with the ultimate goal of becoming an Army Ranger,” he said.
By Nov. 15, 2006, Prior had to quit school. Under a Georgia plan for educating sick students, “my physics teacher taught me heat transfer while I was lying on the couch,” he said. But he slept through calculus.
Ryan still hoped to make it as an athlete. During a brief respite, he was back on his soccer varsity squad. But it was a disaster. He had been put on a drug that provided a short energy boost. “I went to a practice and played for about five minutes. I did OK for the first minute. After five minutes, I realized I had to stagger off the field as soon as possible. If I didn't get off voluntarily, I knew I would have to be carried off soon after.”
After seeing 15 doctors, who knew little or nothing about the disease, Prior found one who has helped him. Now, he says, he functions 90 percent of the time if he takes 15 to 20 pills a day and avoids overdoing it. Ultimately, he graduated Phi Beta Kappa from the University of Georgia.
But it's the almost complete ignorance of CFS by most doctors that has set Prior on his big idea project. He is making a documentary film about the disease with young filmmakers, and with a $12,000 budget. He hopes the film will lead to $50,000 in funding to create “an eight-week summer fellowship program” for medical students, between their first and second years, to study with recognized experts in CFS. They would, according to Prior, provide each student with a stipend of $5,000 for the eight weeks.
Prior has compiled a list of nine doctors or clinics preeminent in the field who he believes would accept the fellows. The end result: a flow of young doctors with a knowledge of CFS and new ideas.
I can attest that this is desperately needed. As far as I have been able to determine there are many states, including West Virginia and Rhode Island, where there are no doctors with specialized knowledge of the disease. One woman travels from Delaware to Manhattan for treatment with Dr. Derek Enlander, and many have moved Nevada to be near Dr. Dan Peterson in Incline Village and the Whittemore-Peterson Clinic in Reno.
If Prior's plan works, it may lead to a much larger training effort in the United States and across the world.
“The message is simple: American history has progressed in a logical line from women's rights, through civil rights, then to gay rights,” Prior says, adding, “Medical history has a similar process of ridicule, repression and ultimate acceptance: MS, AIDS, and now we want CFS to be the next step.”
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Thank you Ryan Prior, any way that I can help, please let me know. Had this since 1989.
Congratulations for a GREAT idea. CFS sufferers from all over the world will benefit from it.
Also, a million thanks, Mr. Llewellyn King, for your series of articles on CFS. This is, indeed, a terrible disease, and indifference and misundestanding about it’s real implications drives many patients to a worsening of their health to limits that are inhuman. With the right treatment, with a real undestanding, they would be in a much bearable health.
Keep spreading the truth about CFS! Thank you so much.
Great idea! Got an online fundraising page? please post!
Thank you so much. This is a great idea. Thanks for spreading knowledge. I bet there are hundreds of thousands who will thank you from all over the world.
Great wishes from Norway.
We are long overdue re everything about CFS/ME. From people (including many of our very own doctors) being non-believers, to having a hard time getting disability, proper healthcare or funding to do proper research/find a cure for this illness. It would be nice one day not to be looked upon as malingerers and have people actually realize that we are very sick and need the help and support that the majority of us don't get.
Sometimes it takes a fresh approach to get the attention that's needed and this is the best idea I've heard in a long time. It really has to start with doctors being better educated. I knew what I had since 1987 and couldn't get referred to a CFS specialist until 2012 – 25 years is a long time to wait for a diagnosis and just as important-finally getting validation!
Many thanks for your fantastic ideas and all the effort you are putting into this for all of us sufferers. I hope we will be kept up-to-date on your advancements and achievements.
WAY TO GO RYAN!
THANK YOU!! I was forced to retire from my beloved teaching career six years ago. I live in WV…and as mentioned in the article, there are NO doctors in my area who give even a nodding glance to CFS. I finally convinced my current Internalist to refer me to Dr. Jose Montoya at Stanford…and it was only when I mentioned Stanford that he agreed. I am basically self-diagnosed after doing as much research as my brain-fogged, blurred-visioned capabilities would allow. My official referral date is May 2012…and at my last check, they were only working on referrals for 2010. I only hope I can make that arduous trip to have a chance at some kind of recovery. The most positive thing I can say about this experience is that I have had more than ample time to evaluate how I want to spend the rest of my life…IF I can get some energy. If not…I might as well jump into the Pacific while I'm there. This can, in no way, be construed as living.
Llewellyn,
As always, Thank you for keeping our patient population up to date on important and up to date events.
I believe Ryan has a great Project. To make a true Documentary that incorporates the Key Stakeholders will become a tool for educating the public, government health agencies and the medical community. I have made my Donation and ask others who are able to, to please Donate any amount to this Project. You can Donate at :
http://www.kickstarter.com/projects/2074880665/the-blue-ribbon-me-cfs-and-the-future-of-medicine
I thank Ryan for his efforts to help our patient population. Together we will beat this brutal illness.
Hi Llewellyn,
I think you forgot to include the link to Prior's fundraising page for his movie:
http://www.kickstarter.com/projects/2074880665/the-blue-ribbon-me-cfs-and-the-future-of-medicine
I've had the chance to chat with Ryan and impressed with his approach to this movie. Thanks for giving it some much-deserved publicity!
A GREAT INITIATIVE, TOGETHER WITH MEandYOU Norway Rituximab project and the recently announced UK Rituximab project throught Invest in ME, these are the 3 major projects we should all be supportings and fundraising for, we have donated and will continue to fundraise and if I, as a severe ME/FM sufferer bedridden 21hrs a day and on a pension can do my part then we all can! Thank you Ryan, more donations from Australia soon 🙂
David and Tracey Doherty and family in Australia xo
The address of Ryans sight where you can donate to help make the documentary a reality is http://www.kickstarter.com/projects/2074880665/the-blue-ribbon-me-cfs-and-the-future-of-medicine
Let's help.
A fellow sufferer.
For those who would like to support the project, the link is here: http://www.kickstarter.com/projects/2074880665/the-blue-ribbon-me-cfs-and-the-future-of-medicine
Well said, Ryan. I've said of a long time that gay rights is the last civil rights frontier, but now as an ME patient, I know it's Civil Rights for ME and a few other diseases such as Lyme and GWI that CDC and NIH have targeted in a war on science and patients. Thank you for your commitment to showing the world who we are and the crimes being committed against us by CDC and NIH.